Tests for Mild Lupus

[georgie63]

Hi. I have Lupus SLE, but apparently they say i only have it mildly.

As I haven't got the full blown version do you think I should still have the regular blood test checks and do you think it would be necessary for me to have the flu jab too.

When I last went to my doctor I asked him if i should be having regular blood tests, and he hasn't got back to me, which is well over 3-4 months ago now.

Considering I only have the mild version, I do relate to lots of posts that are put on the forum here.

Thank you for your thoughts.

[Purpletop]

A mild version doesn't mean you won't have symptoms, it means that your organs are not (at this point) under attack. depending on the severity of your symptoms you'll be given medication. Certain medication impact the body and that impact can be checked through blood tests.

So - whether you need to have regular blood tests depends on whether you have been given medication that require regular monitoring, e.g. Methrotraxate, Azathioprine, Mycophenolate, and other immunosuppressive.

Without those you don't need regular blood tests. The way your GP or consultant specialist monitors you is through symptoms. If you feel unwell, or your symptoms are increasing, then you'll be having blood taken for tests. But on an ad-hoc basis, not regularly.

There may be some doctors that could, in principle, ask you to do blood tests on a regular basis in the absence of an immunosuppressant but in today's push to squeeze their budgets, I think that would be rare.

[georgie63 in reply to Purpletop]

Thanks purpletop,

I'm not on the drugs you mentioned, but I am on hydroxychloroquine, so presumably that one doesn't need regular checks.

I just don't trust my surgery as they very rarely check my thyroid condition, unless I ask.

But thanks for your explanation.

[Chapter]

Yes, georgie63, I think you should have the flu jab, Lupus or not.

[georgie63]

Hi chapter,

Thanks for your comment, my surgery are not ones who give things out freely, I may have a fight on my hands...ha ha

[Lupylass]

Hi Georgie.

For hydroxychloriquine you should get your eyes checked annually. Some GP surgeries do this, sometimes the rheumatology clinic will arrange this or you can see your optician. I go to my optician.

When I was on hydroxychloriquine only, my Rheumatologist still did blood tests at every routine follow up appointment to check disease activity and for co-morbidities. I also get my urine dipped every time I attend the Rheumatologist.

This still all happens even though I get regular blood tests for methotrexate, since those blood tests only cover the shared care protocol bloods (FBC, U&E's, LFTs and ESR). They don't include complement or Double stranded DNA, for example, or cholesterol, so my Rheumatologist will do these and anything else she feels is appropriate. .

My lupus is also classed as mild, but that doesn't belittle how rubbish we can feel or that we require good follow up.

When I was first diagnosed I was advised to have the flu and pneumococcus vaccinations.

Best wishes to you.

[georgie63]

Hi Lupylass,

Thanks so much for your explanations also.

I just feel like I've been diagnosed and dumped.... because I was diagnosed last November with it, but I haven't been told that I need regular check ups or blood tests.

As for my Rheumatologist, she told my doctor she doesn't need to see me unless he is concerned about anything .....so you can see why I'm asking.

I read the posts on the forum here and everyone talks about their blood checks and things and I was just wondering why I haven't been told about any of them, which is why I decided to post.

But thanks very much for your explanation and advice.

Xxx

[Wendy39]

Hello. I know exactly what you mean. I was diagnosed last November too. I have subacute cutaneous lupus or SCLE. It has been a roller coaster of emotions and a steep learning curve - sorry for the terrible sayings but they are true. I felt relieved at first - that I was finally being taken seriously but then the reality of being diagnosed with a chronic disease sank in. Mine is categorised as mild but not a day goes by without a symptom, or two or three and then there's the hospital appointments and remembering the hydroxychloroquine etc. It might be mild but it is still life changing. I like to be prepared and so bought 4 or 5 books to read and educate myself. I also rely heavily on this site for information and emotional support and it has been invaluable. I hope you start to feel better soon. If you have any other questions just ask and even if we don't know the answer it helps to share and not feel alone. Good luck! Wendy

[georgie63 in reply to Wendy39]

Hi Wendy39,

Thanks so much for your kind reply also.

I've also purchased books to read up about it, as I'd never heard of the illness beforehand. It's quite terrifying when you do read about it all, but also makes you realise what things need to be done regularly to check how you are doing etc.

Which then led to me putting up this post.

I haven't got any future appointments to see my doctor or my Rheumatologist, only if I have anything that arises in the future. But I don't know how they can keep a check on you if you're not having regular checks to keep an eye on things.

But perhaps I'm asking for the impossible and don't necessarily need them. It's so hard, you think once your diagnosed everything is sorted but obviously not.

Anyway wendy39 Thanks for your kind words.

[chrisj]

Self care seems to be the way it is these days, sometimes you have to ask for checks and appointments.

I'm diagnosed with mild SLE as well Georgie....found out in 2005 and since then I've had yearly apps with a rheumatologist. I see him every 12 months for blood tests and a urine test done while I'm there, BP also. I'd never heard of it either and was given a leaflet by the doctor who gave me the results of all the blood tests they did in 2005, and that explained clearly what the symptoms were about.

I also see a nurse at the hospital mid year, usually 6 months after the rheumatologist, just to talk and they do blood tests again. As for my gp they don't seem to know much about lupus at all and were treating me for RA with a drug that gave me an ulcer. Thanks to a locum who sent me off within 2 weeks for proper tests they found lupus and I now have the right treatment.

I'm on plaquenil (hydroxychloroquine) so have an eye test every year as well...so yes I think you should be getting regular checks to keep an eye on things. As the doc who gave me the leaflet said, they cant cure lupus but they can control it. I would insist on at least having blood tests each year...

[georgie63 in reply to chrisj]

Thanks very much Chrisj.

It's obviously the way to go then, I thought you were automatically sent for, to have these tests.

Looks like I'd better book in for a flu jab then....ha ha

Many thanks

Xxx

[chrisj in reply to georgie63]

Keep as well as you can Georgie, you're entitled to checks...wishing you well xxx

[Chrissie_up]

I have had lupus for 19 years now. I would recommend blood monitoring as it can help with eay intervention.

Lupus is an unpredictable disease and regular blood tests can help doctors treat you before the disease takes too much of a hold.

Hope you are well x

[Chrissie_up in reply to Chrissie_up]

I have a typo! *early intervention

[georgie63]

Thanks very much Chrissie_up !!

Wow you've had it 19 years, I bet you could do with a nice break from it all..lol

Xxx

[Hidden]

Hi georgie,

I also have been diagnosed with mild lupus amongst other things, and I was given another appointment for 4 months later. Since then my appointment has. been delayed until September. I would think you should be seeing your rheumatologist regularly at least twice a year usually with blood tests.

I myself have had a sudden bad flare, the first of this severity, and didn't know what to do. I called my GP and asked for blood tests after explaining my symptoms who then arranged new blood tests which are for the first time showing inflammatory markers in my blood. I was going g to have to wait until next Wednesday to talk to the doctor about the results a weeks delay. I felt so ill I called and asked for an urgent appointment, and now am taking prednisone which I hope will help with a follow up appointment in 10 days.

So if you have another appointment with your specialist they will take blood tests I should think, but be aware that things can change and don't hesitate call your GP for help, and keep on the case. I wish now I had seen my gp straight away after diagnoses, so that he was aware.

Good luck caz